Tuesday, November 7, 2006

Who wields a poem...

Rebecca wrote something the other day that exploded all of my current posting plans (which, if you’re interested, included the post on judgment, a post about that resource page that I am putting together, a post concerning my reflections on the loss of the friendship that I wrote about some months ago and a post about why I, despite my admiration for all you NaBloPoMo participants out there, simply cannot post every day). She wrote about the children that she works with through the Starlight Foundation – children who are dying. Children who die. Children who disappear.

My nephew is dying. I’ve discussed this here before. It’s not one of my favourite topics, obviously, but it is something that looms large in my life, and something that I might write about more often if this were a private diary, and not a public blog. I’m not sure, exactly, why I don’t write about it more often – why I don’t write about my ongoing guilt and regret that we cannot visit him more often, why I don’t write about my persistent fear that, despite all of the test results to the contrary, the gene that is at fault for his condition lurks somewhere in my sister’s body or in my own, why I don’t write about my admiration for my sister, who lives each day knowing that her child will not live. Why I don’t write about grief, about fear, about loss, about death. Why I don’t write about him, and everything that he is bringing to our lives – the joy, the humour, the wonder – through his own short life.

I could offer a thousand explanations: I don’t write about these things because they cause me pain. I don’t write about my nephew or my sister or their family because their story is not mine to tell. I don’t write this story because I think no-one wants to read it. I don’t write it because it hurts. I don’t write it because I don’t want to acknowledge it. But, end of the day, what remains is simply this: I don’t write this story.

And in not writing this story, I am complicit in the silence that surrounds my nephew. The silence that Rebecca alluded to, the one that settles like a deafening snowfall upon the stories of all these children, these children who are dying, who have died, whose stories we never hear, who simply, quietly, disappear. I have a voice, I could tell his story, I could ensure that there is never any silence surrounding his life, and – when it happens – his death.

Why do I not do this? Why doI not?

This is the point in the post where I swear upon the blog gods that I will write about Tanner more frequently. This is where I put out a renewed call for action posts, or for posts in honour of children that you know who are struggling with illness, or who lost their battles with illness. This is where I am supposed to announce what it is that I am going to do to break this silence.

But I can’t. I can’t promise that I will begin to write frequently about Tanner, because I simply do not know that I can. I am going to try, but I can’t promise anything. And I can’t ask you to write about children like Tanner, because I feel too keenly how difficult it is to do so. I feel some shame for this (coward), but there it is. Here is where my efforts to be a writer come up against the limits of being human-all-too-human: I cannot write through any pain, through any existential confusion. I cannot write my life in its entirety, with all of its fear and pain and ugliness. There are limits to what I can write.

Perhaps this makes me less of a writer than I thought I was. I don’t know.

All that I can do is forgive myself this limitation, and to offer these small efforts toward overcoming it. And to commit myself to such efforts, as often as I can, in whatever form I can manage them. To quietly chip away at the silence as best I can. Because I must do what I can, no matter how difficult, no matter how coldly down the bone such efforts cut. Because to not to do so is to sanction the silence, and all the misunderstanding and hurt that come from such silence.

So I will do what I can, even if those efforts feel so small.

And I'll ask that you do the same: seek out organizations that support childrenlike Tanner. (Rebecca has listed many in her post.) Support these organizations. Notice children like Tanner; talk to your own children about children like Tanner. Talk to your children about talking to, being friends with, children like Tanner. Talk about the fact that children disappear every day, after struggling with cancer or muscular dystrophy or one of the many other conditions that end young lives too soon. Talk about how lucky you are, your children are, to have health, strength, life.

44 Comments:

I can't see how it would make you any less of a writer to not be able to write about Tanner. Having limits to what you can write is more than reasonable - perhaps another day you may be able to write volumes about him (or others like him). There's no telling what time will bring to the situation, and it seems to me perfectly okay not to write about it now. (I certainly don't believe not writing about it doesn't mean you care any less) He's a beautiful kiddo.

i would love to hear about it. i would. i would love to hear how it affects you. but i understand what you're saying- i understand the pain.. admitting something so awful is real in writing about it. but i would read it. and so would many others. i love your beautiful heart and soul woman. and i miss you at this very moment, immensely.

Forgive me if this sounds mean at this moment but I am tired of hearing people say "it's not my story to tell". With regard to my own children, I am not telling their story, I am telling my part in events that take place in my life, my take, my involvement, my emotional responses. I want to hear how Tanner's life and illness change you. I don't need to know what he had for lunch unless you made it for him. I want to know how you feel about him. I want to listen to you tell me how much this hurts you.It's your story of this that I want to hear.

I have the greatest admiration for those who work with children who are terminally ill, who face the parents of those children. And I have the greatest admiration for those parents.

My NaNoWriMo novel is about a little boy with muscular dystrophy. Tacy asked what I was writing about, and I told her, "It's about a little boy who's sick." She asked me, "Will he get better?"

I couldn't even bear to tell her that a fictional character would not get well. But this might actually be a good way to begin explaining that it's not just old people like her Granny who die, but sometimes people - children - just like her do too.

I will talk for Tanner. Thank you for writing this powerful post. I completely understand you when you say you have "limits to what I can write." I can't stand my own silence sometimes. I think many of us can understand that.

Having lost two very special people in the last three years I understand where you're coming from in regards to not writing about the pain and the sadness. But the thing that you need to remember is that he's here now. Focus your time on that. Writing about him, either on your blog or in private, is a wonderful way to help you remember the good parts later, but your energy (and I'm trying not to preach) should be spent on phone calls and letters to him and your sister.

Again, I'm trying not to be preachy but I never miss an opportunity to tell someone to not waste time if they know someone doesn't have that long on this earth.

Your post was both heartwrenching and beautiful, and you wrote about him- and the pain that it causes all of you- the fear and the denial.. all these are the things that come to light when we hear of the poor health or the demise of a child- A CHILD! it makes us question EVERYTHING! it hurts and it makes us want to hide and clutch our children to us and never let them go- to be out of our sight or our reach would be too painful. I cannot imagine your sisters strength, or her pain- and I cannot imagine yours either- do not feel guilt- sadly it is something that is hard to speak of- it makes it too real. Sadly- it is real and it happens too much. Your readers, like myself can only offer an ear ( eyes to read your thoughts) a shoulder and our prayers...and even then, we know that that isn't enough.

Being a mother of a child with a heart problem, and also a child of someone who caused me great pain, I completely understand why you do not write more often about Tanner. It is the same reason I don't post at The Motherless more often, and the posts I do have about Dylan's heart took great amounts of fortitude to write. These are the things we need to find the time to write, to cry, to write some more, and let our hearts hurt. You cannot force that kind of writing. It just comes at times when it's late and you ought to go to bed, but the pull of letting yourself feel is too great. I totally and completely understand.You will find those times, and the writing will simply come. Trust me in this.Karenxo

i agree with what heather said - you never know what time will do. it took me over five years to be able to write about my father (whom i lost to cancer). when it first happened, there was no way i could even begin to put feelings on paper. but eventually, the words came, and i wanted - needed - to get them out. we write when the time is right, and not a moment sooner. and i don't think that's something to be ashamed of.

Not wanting to write about this does NOT make you any less of a writer. You are human and this is so big, bigger than anyone who is not experiencing it can really comprehend. When you are ready, the words will come.

Sometimes these things are too painful to write. But, we honour these children and their parents and families by feeling this pain (as we write), and by cultivating a greater awareness. You do what you can. You honour him in your own way. You can do no wrong. You could never be any less of a writer for writing or not writing about Tanner. Sometimes it is just too painful. There are other ways of honouring than writing, as you obviously know. I'm rambling -- it's so hard. I'm just so sorry that you and your family are going through this.

My recent blogging conflict has come not from a sick child, but from my best friend of many years who died in August. She had many serious illnesses, any one of which could have caused her death, but ultimately it was breast cancer that took her. Pretty much every day since then I have wanted to write something about her, because I think of her every day, but I know that would be too much. After reading your post today, and thinking about Rebecca's, I am going to give more thought to finding a way to incorporate her memory into my posts without stepping over the line of telling someone else's story instead of my own.

You made me realize that we, as a family know no truly ill children. And how lucky we are for that. Yet I feel luckier knowing about Tanner and being asked to think about talking to my girls about these things.

Thank you for your beautiful post and ideas on how to engage. I was inspired by my young sister-in-law, who is studying special ed and is a camp counselor every summer for children with special needs. She really engages all children, but especially those who are different, when we go out. And that's really the way we can meet people instead of just seeing the medical stories.

It's hard to write about things that are painful. Someday maybe it will be easier to write about Tanner, but perhaps not. I am a big avoider of writing about painful things, so I'm ducking responsibility there myself.

I think I understand why you don't write more about Tanner and his battle with this illness and how it effects your sister's family and you. Because it hurts terribly. And it's happening now. And trying to explain it all and all your feelings can be so.damn.hard. Because it's.so.unfair.

I personally have found that time and distance are when I am able to talk coherently about these things. I lost two childhood friends to leukemia. I also lost a three year old cousin to drowning when I was just nine or ten; clearly not the same as a long drawn out illness, but just as horrible and unfair. It took a long time for me to be able to talk about these things and how they affected me. I always cared; it's just when you're so close, when the situation is happening so close, it can be hard to get the words out.

So only do what you feel you can do when it comes to talking about Tanner. It is his story; and your sister's; and yours. And when you're ready, you'll tell your part of it. But please don't push yourself to tell all if you're not ready. Just do what you can, what you want, what you need to.

And when you are ready to talk about it more in depth, everyone will be here for you.

HBM, just so you know, I do like reading your posts about Tanner (in a "they make me cry and rail against the injustice of the universe" sort of way, but still). Ever since I found out about his situation I have often wondered how he is doing, and how his mom is doing.

In fact your post titled "The Heart is a Muscle" was the post that caused me to add you to my blogroll. Not because I like reading about tragedy (I don't, particularly), but because it was one of the most beautiful things I have ever read, and even as it devastated me to read it, it left me in awe of your power as a writer.

I definitely understand why it is so hard to write about it, though. I am sure writing about it is very painful.

i swear you might have been speaking to me directly, you have read my post on my nephew in honor of his first birthday, today i wrote a post i feel a little guilty about putting up about our genetic screening results because it is too heavy, too emotional-i was crying as i typed it, but felt i just needed it to be out there in the universe, that it somehow made me feel better, so guilty that i posted a preface so people could just skip it if they didn't feel like going there...and here is your post about talking about it, like a sign that i should leave out there...all i can say is thank you. it is posted on my msn space http://rnmom.spaces.live.com/ not blogger

Catherine. But you have written about sweet Tanner. And through those posts I feel like I have had a chance to meet him and, honestly, he is often in my thoughts. I think about the children like Tanner who touch the world in such a special way. Hugs and love to you and your family my friend.

What a beautiful child. I am speechless. And embarrassed about that too.

You've inspired so many of us to write recently, about our passions, about our love for our children. This post was inspiring as well. I have no personal connection to children that disappear -- and yet, you have moved me to learn more and to support those that I find.

Thanks, all. I still feel guilty. I guess it's that I feel that I should be able to overcome my reluctance to write through/about fear and pain. Or that I should at least be able to write about happy things about him. But I find that even harder, sometimes, because the dark edge of grief is always there.

I guess I thought that I'd be able to get above it, past it, whatever and just write. That it's hard is hard, if that makes sense.

You're certainly not less of a writer - just more of a human. Writing through pain is not something most people do and I believe, not even most writers. When you take a memoir class, one of the crucial elements to writing successfully is having time and perspective. Otherwise it's journaling. And while blogging may be more like journaling, it's perhaps then less of writing (in the classic sense). You'll write about painful stuff when you're ready. Or maybe you'll write about the painful stuff now and share when you're ready. Or maybe you'd just rather not write about it at all because it's yours and no one else's.

It's hard for any writer with a heart to write such painful experience especially when it comes to children. I know I wouldn't be able to do it. Just reading this post alone makes me teary. I cry for Tanner, for his parents and for you, his relative, who has more a voice than you think.

Do what you think it's right for his family and for you, noone else. But to introduce your readers to the terrible diseases that are taking over our young children so that we can be educated in the long run.

As I was tossing and turning last night in my sea of insomnia I thought about my initial comment on this post and I felt it was wrongly put. What I meant to say is something more like, we are blessed not to have illness in our children's lives, NOT as I said, that we were lucky not to know ill children.When my Big Girl was in SK, one of the boys in her class was very ill with cancer. He was undergoing treatment, and all of the families pitched in to help in any way we could. Bear in mind they had two other children to care for as well. It was hell on earth for them. But every child in that class got their eyes opened WAY up, and it was beautiful, the natural understanding they had. Gives one hope. (Oh, he got better.)And you know, you have written about Tanner, and it was beautiful. Move through it, cycle back to writing about him as often as you need, you obviously love him very much. And through writing about him, a few more people know of him and his ongoing story. That in and of itself will be a stunning legacy.

A beautiful post, one that touches me deeply. Writing can help deal with the thoughts and emotions that are rattling around in your brain. Even if you don't share them here, it helps to get things down on paper. We'll be here for you if you want to share. It seems like Tanner is a beautiful child and you are so lucky to be in his life.

I don't know you. I don't know Tanner. But you have made me weep. In not writing about him, you ARE writing. This may be one of your most powerful posts ever. Through my tears, I thank you for writing it. And I thank God for my healthy children.

I completely understand why you don't write about Tanner. I have a nephew who was hit by a car.

While the experience was heartbreaking, tragic, and in the end uplifting, I'm not sure how my family would feel if I wrote about it. It's not my story to tell either...and writing about it could be painful and yet healing for me, but the consequences could be a rift in my family. They don't even know that I have a blog.